Luli - Post Op MRI Pics

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Luli - Post Op MRI Pics

Postby JenandLuli » Sat Jan 23, 2010 5:35 pm

Hey All!
Luli had her MRI yesterday as the follow up to the surgery. I wanted to show you all the pictures because no one had heard of the "gelfilm" and how it would work. You can see pics at her caring bridge page here:
http://www.caringbridge.org/visit/luli/photos
I posted them in order so you can see what her syrinx looked like along the way and them post-operatively.

I am waiting for the radiologist report... but to my eye it looks good. They did the surgery on her lower syrinx and the upper one is shrinking! The lower one is not deflated, but it is smaller than it was.

Luli is again starting to have about 1 pee-pee accident a day... after surgery she did not have one for 2 months, but they started again New Years. I wish we had an MRI from right after the surgery and now so we could see if the syrinx is growing again.

We will see the NS next month to discuss the MRI results and her progress.
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Luli - Post Op MRI Pics

Postby Janice » Sun Jan 24, 2010 3:33 pm

Hi Jen,

Thank you for sharing Lulu's pics with us. I'd say, even without the immediate post op pics, there's a drastic difference in her syringes. I agree though, it really would be advantageous to see what the syringes looked like after surgery.

While Lulu's symptoms might have appeared to halt directly after surgery, the one's that were either present for the longest period of time, or those that have actual nerve related damage, would return. These surgeries are not a cure. There is no cure for these conditions.

It could take up to a year, or more, to see the majority of improvements, especially those w/nerve damage involved. There's really no telling which symptoms will completely resolve, or which will remain. There's also the potential of some being worse than pre-op. The recovery period can take up to as long as 6 months, depending on the patient, their overall health and any surgical and/or post-op complications.

We pray for the best, however we deal w/the reality. Initially, it seems the gelform really worked in the resolving a great deal of the syringes. That's great news! Over the next 6 months (well about 4 months now, right?), you'll have a chance to see what has actually improved, stayed the same, or worsened.

I truly appreciate you sharing this information with us. Please continue to keep us posted. I pray she continues to improves. Did Lulu have Tethered Cord Syndrome, if so, did she have the release? Urinary problems can be a result of Tethered Cord. If this is the case, with the return of this symptom, she might be in need of release in order to see full improvement of this symptom. It can be caused by SM, and Tethered Cord. Just a thought.

Take care, I wish more success over the upcoming months. (((((Hugs)))))
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: Luli - Post Op MRI Pics

Postby Lipper5 » Tue Jan 26, 2010 9:19 am

We go next month to have a shunt placed in our 3 1/2 year old son. I talked to the Dr yesterday and mentioned the procedure your daughter had. I wanted to check all options as I am a nervous wreck about this. 2 years ago a Dr wanted to do this surgery on Aiden. We were scared like you and decided to seek 2-3 more opinions until we found our Dr in Hershey PA. He decided to do decompression surgery for Aiden and fix the Chiari (which he did) but the syrinx would just not go away. It did stop it from growing any bigger. But starting in December out of the blue the accidents started to happen. So he said it will most likely get worse. I am glad you are on here to read the story of your daughter to help me get through this. I pray for you and your family. Take care

Krista
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Re: Luli - Post Op MRI Pics

Postby jupes » Wed Jan 27, 2010 10:27 am

Hi Jen!

Glad Luli did so well with surgery and the syrinx is smaller! Pray she continues to improve and symptoms resolve!

(((HUGS)))
Julie
14 yr old DD with CM 0/SM and mild scoliosis.
"Trust in the Lord with all your heart and lean not on your own understanding" Proverbs 3:5
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Re: Luli - Post Op MRI Pics

Postby Lipper5 » Mon Feb 01, 2010 1:56 pm

Hi ...my son his having a shunt placed on Wednesday and I wanted to see how your daughter was after surgery. Did she stay in ICU for a day or two? Could she feel her legs right away? Let me know if you have time. Thanks
Krista
Lipper5
 
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Re: Luli - Post Op MRI Pics

Postby JenandLuli » Mon Feb 01, 2010 2:54 pm

Lipper5 wrote:my son his having a shunt placed on Wednesday and I wanted to see how your daughter was after surgery. Did she stay in ICU for a day or two? Could she feel her legs right away? Let me know if you have time. Thanks


She wasn't in ICU - but she did stay at the hospital for 5 days. She had to lay flat for 48 hours post-op. That was a bit difficult. She was in pain and the nurses weren't the best at keeping on top of it. Make sure that you are a LOUD voice for your son to make sure her gets his meds when he needs them.
She did have ALOT of nerve pain in her left leg (the leg that has always been weaker) I thought she had nerve damage from the surgery, but the drs said it was all the nerve coming back to life that had been numb for so long. By day 5 she had no more pain in her leg.
She also had inconinence issues. After they took out the foley cath, she could not go on her own... the may have taken it out too soon, I don't know. I had to learn how to cath her so that she could go and empty completely... but again, by the 5th day she was going on her own and emptying completely. :-)
After we were home she was moving WAY MORE than I thought possible. She would move more slowly, and would gingerly bend over to pick up things... but she was feeling well enough to do everything for herself, and she wanted NO HELP! I think kids self-regulate on what they can and can't do.
Let me know if you have any more questions.
:-)
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Re: Luli - Post Op MRI Pics

Postby Lipper5 » Mon Feb 01, 2010 3:07 pm

The only thing that worries me is that you said she had a cath. He just had meatal stenois repair ( had to open up the hole in his peep this past WENESDAY! And it still bleeds and is sore. The NS knows he had this but I didnt think about a cath. Good God I hope that will do OK. Our Dr said Aiden will be in ICU at least one day if not two and then moved to a regular room. He said if all goes well we will be in on Wednesday and out on Saturday. I am so scared about the part about possible paralysis in the legs. I will be a nervous wreck. Did they say that could happen to her? And was it normal to be that way for awhile? How is her bathroom issues now? We are so worried that this wont be fixed. But he said we are doing this at the right time! Thanks for all of the info. I know they arent having the same exact thing but I think it is similar.

Krista
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Re: Luli - Post Op MRI Pics

Postby JenandLuli » Mon Feb 01, 2010 3:24 pm

Luli had pee-pee issues before surgery. Basically she didn't have the urge until she was starting to go. Her bladder had a large capacity because she was holding it for so long that her bladder was stretched bigger. She went accident free for 2 months post-op, but is starting to have a few accidents a day again. I'm waiting to see what the NS says about that.
They cathed her, i think, as per normal for surgery... and she had to lay flat for 2 days so she couldn't get up to go.
As far a paralysis, that was my biggest worry too. They had a monitor in the surgery room constantly monitoring the nerves and if any were being affected. after surgery they told me that the monitoring went well, and everything went smoothly.
Luli has no ill effects of the surgery... only good! Although her accidents are returning, i know we did the right thing. she rarely complains of pain, where before surgery it was daily, and sometime debilitating.
HTH!
Jen
Mommy to Luli - 6 years old
SM - Torticollis - Plagiocephaly
Surgery on lower syrinx Nov. 09
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Posts: 100
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